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Monday, March 25, 2013

Who Would Dream This Up?

Pardon me, I am feeling a little sour today.

Back to the pediatrician we went today--to confirm my suspicion that strep has not left us. First I took my sweet girl, who is again....not so sweet. She had a big, matted mass of hair right at the nape of her neck which she would not let me touch. The intensity of her not liking me had come down a little after a couple of Advil, but she was still far from kind.

The nurse, who last visit had to help me hold sweet girl down for her Bicillin shot and seemed shocked that my eleven-year old would tell her mother no, called us to the door when it was our turn. Her face showed no sign of what must have been going through her mind as she realized it was us.

Sweet girl was all smiles with the staff and surely seemed awkward, but not a threat by any means. The nurse seemed puzzled when I had no definite strep signs but thought that she still had strep. I sent sweet girl out of the room with her little sister and reiterated that my daughter is raging at home, has an autoimmune issue related to strep and other illnesses (PANDAS/PANS), and told her that I had to be sure that we were clear of strep. I could tell that she didn't understand and thought that maybe I was missing something.

When the doctor came in, I watched as he seemed to be reading notes from the nurse and saying, "Hmmm." He, too, seemed puzzled about why we were there, said her throat looked great. She seemed fine. He said he would do a throat culture and see what grew rather than a rapid strep because then we might get a false positive. Ummm, ok. Maybe. But I still wanted it. Couldn't convince him to do both.

Sweet girl took little sister to the bathroom at this point, and I took the opportunity to tell the doctor, "You have no idea what is going on at home." I told him about the holes in our walls and the constant raging. He said with a smile, "Yeah, but it doesn't last long, does it?" like I must be exaggerating.

I looked that doctor straight in the eye without blinking....the look that says, "I am as serious as things get." And I said, "Yes, it does last long. Like all day. Just this morning she pulled out a knife." To which the doctor replied, "What was going on at the time?" (like this is an appropriate response for a kid in any situation short of being threatened with their life?) My response? Again, with unblinking eyes, "We were asking her to take her medicine."

"Really?" he said.

So we left with the idea that we'll get a call before noon tomorrow telling us what grew or didn't, and I'll sleep on the idea that I don't think the nurse got a good swab. Sweet girl hardly gagged. And she ALWAYS gags and grabs the swabs and kicks and becomes indignant.

2 comments:

Did you get the results of the strep culture? I'm sure you know that strep can grow in other places, such as sinuses, skin, kidneys, etc. Although many kids never elevate titers, it might be worth asking (insisting) on those. Oh, how I hope she's doing better... I so totally feel your pain. Another PANDAS momma ♥

Yes, we got the results....negative. I don't think that was accurate; I don't think the nurse got a good swab. However, we are headed out to another doc in a couple of days, and I don't think I can get this pedi to do another culture right now.

Yes, I've heard that strep can grow in these other places, and specifically think that our girl has had this, yeast in her kidneys. As I go back over her history, I see suspected UTIs one after another...often with negative results.

About Me

I'm Mama to four beautiful children, one of whom has PANDAS, Lyme and a few more things that we are finding out about along the way.....We treat girl with psych meds for two years before we found out about PANDAS and Lyme and then another two after we were unable to find local help treating her. Finally, after many side effects and not enough improvement we weaned down off of meds to witness a PANDAS exacerbation of OCD symptoms within the next week. Was that God saying, "Treat what is CAUSING this?" I think so.